Thought I'd post some photos....... liven the blog up a bit!!

This is me at the NHCN conference in Derby last April. It was the first time I'd met all the great people who have been & are continuing to support me. I love each & every one of them & feel so very lucky to have them in my life.

This is me taken on May 19th 2007, at the get together we had in Swineshead. I had the time of my life that weekend, & feel much richer for the experience.

That's my mum with me at the get together we had in Swineshead. She was really nervous about going with me coz she didn't know anyone, but that nervousness soon disappeared - just look how happy she is here! The weekend was an invaluable experience for her. She learnt a hell of alot about Hep C & finally started appreciating what it all entails (the disease, treatment etc etc). My mum is my rock.... always there to give me unconditional love & support, which I strive to return. Thanks mum, for always being there for me - love you millions xx

I feel good ....... I knew that I would, now....

Hey people! This is the start of my 2nd week - had my 2nd jab this morning & I must say, so far, so good!! I know things can rapidly change, I'm certainly not deluding myself that the whole 48 weeks is going to be so easy, but I have given myself a pat on the back for sailing through the first week.

I had my 1st jab at 10am last Thursday & decided not to go to work afterwards as I wasn't certain of how I'd react to the treatment. As it turned out, I had a very good day, with just a bit of hip & backache to contend with (& after 15 years of coping with arthritic aches & pains, this wasn't a big thing at all!!)

Friday is normally gym day & last Friday was no exception. I was up at 6am, had 1 1/2 hrs in the gym & then straight on to work. I found the gym workout a little harder going than usual, but took it in my stride. I did get a slight temperature too, during the day, but 2 Paracetamol & I worked my way through it. The only one thing that p!ssed me off a bit, was the fact that I was peeing every 3/4 hr or so & I couldn't settle to work at a job for needing the loo so often - LOL!

Saturday through to today have all been good days. My urinary frequency has settled down nicely & although I feel a little short of breath at times & have noticeably more nasal mucous, I STILL FEEL GREAT!!

On Tuesday, I saw my rheumatologist. He was quite pleased with how I'm handling things & was impressed that I'm managing fulltime work & the gym! He's advised me to try cutting down my 10mg Prednisolone (steroids I take for the arthritis) as it's slightly too high a dose to take long term & I've been on this dose for nearly a year now. So, the plan is to take 9mg for a month & if that goes ok, then reduce a further 1mg each month - nice & easy does it!! He said that if I can get down to 7mg, he'd be happy - if I can get down to 6mg, he'd be over the moon.

So, one day at a time, coz I am a realist & know that, not only have I got to deal with the hep C treatment, I've also got to look after my arthritis too!

I must admit though, before I forget, that I did get a bit snappy with my niece on the phone last night, which isn't really like me. She's coming over from Germany at the end of July for a holiday & we were discussing the legal limit for bringing cigarettes with her as they're cheaper there than here. Anyway, she does tend to repeat herself sometimes & I was late to go & meet a friend, so (I'm sorry to say), I did snap at her, which I have since apologised for!

That brings me to today. I wanted to have my jab at the same time as last week, but couldn't coz I had an appointment with my chocolate teapot at 9am. So I did it before I left home, then went to clinic & reported that I felt great & left with a blood test form for next week & a stern warning that I mustn't expect the whole time on treatment to go so well - hey, I'm a big girl & a realist so tell me something I don't already know!! I had my bloods done too & will get the results when I return to clinic next Thursday.

Earlier this week, I posted a photo of me on the Hep C Forum flicker page & added the caption "What I'll look like if my hair falls out on treatment", meaning I'd just shave it all off! I've had such a lovely response from people telling me that I look cool in that photo (attached to this post) & encouraging me to shave my head now, before the hair fall out. So, I mentioned this to the couple of girls I work most closely with (the only ones who know I'm on 'a kind of chemo' apart from my manager) & they thought shaving it prematurely to be a good idea coz then people won't ask questions about why my hair's falling out (if it ever did happen) & that I should do it for charity. So, that's the plan - get people to sponsor my head shave & hopefully make a little bit of money for Hep C, which I think is such a cool idea!! Will let you all know how it goes & will post photos, of course.

So folks, one week down, 47 to go.

More next week............

D-Day has finally arrived!!

Thursday 25th May 2007 – My first treatment today!
Well, I’ve finally started my journey through the hep C treatment.
I actually managed to get 5 hours of really solid sleep last night & I got up early this morning to several text messages from family & friends wishing me well & saying that they were thinking of me – what a boost that was, I can’t describe!!
My clinic appointment was 09.30am. My mum came with me, bless her. I think after talking to so many of the heppers last weekend, she realises what a hard slog this may be for me & is quite determined to be there for me.
We got to the hospital at 09.15am, in plenty of time to go to the pharmacy & collect my drugs before going to the clinic. I’ve been prescribed 180mcg Pegasys & 200mg Copegus ( x 2 mornings & x 3 evenings).
I didn’t have to wait long when I got to clinic. My chocolate teapot took me in within 5 minutes of me getting there. We had a general discussion about the treatment & it’s side effects & then she got me to complete a questionnaire on depression – I got a low score & am deemed not to be depressed (in fact, in optimum mental health to start treatment!). She also got me to sign a consent form which I wasn’t expecting to do & gave me a copy. Oh & let’s not forget the weight – 60kg, which is slightly more than I’m happy with, but hey, it’s not the end of the world. (Truth be known, I’ve been constantly eating over the past few months, so it’s no wonder that I’ve put a little bit of weight on. So now, if I do loose a little weight, I’ll actually be quite happy!).
We also talked about the new research supporting the reduction of treatment for cases of genotype 1’s with low viral loads. She said that nothing will be decided this early on & that it will be reviewed on the results of each blood test that I have. Having sought advice from my fellow heppers on this one, I’m inclined to push for the full 48 weeks treatment, especially if I’m not having too rough a time of it, then at least I’ll know that I’ve done all I can to win the battle that I’ve started.
That done, she talked me through how to give injection with ‘dummy’ shot supplied by Roche. Surprisingly, I coped very well in handling the syringe & she asked if I’d like to give my first jab, which I was delighted about. The needle went in at 10am & she complemented me at how well I did it. I found the actual injection really easy. I did it with no apprehension whatsoever & didn’t really feel a thing!
I got lots of goodies, courtesy of Roche – cool bag, daily tablet box, note book etc
She made sure that both mum & I had her contact numbers & emphasised that we could call her at any time.
I left with a copy of my last blood results & an appointment to go back to clinic next week when I’ll have my first bloods done.
On the way home, we went shopping – just to Asda for ½ hr to get some pro-biotic drinks & by the time I got home at 11.15am, I started to get an ache in my lower back. I took my first Ribavirin tablets at 11.30am & by 12md, my back ache was more generalised. I then had my 2 Paracetamol & 4 hours later, still have this back ache, but otherwise, don’t feel too bad.
I booted up my pc & logged onto the Hep C forum where I found lots of good luck & best wishes messages which brought tears of happiness to my eyes. I feel truly blessed to have such a wonderful network of support – I don’t know where I’d be right now without them!!
So, injection one of 48 done, I raise my bottle of water & toast the good fight against the Hep C virus – may it die a swift & easy death!!

Hello again!!!!!

Well, I did say in my last post that I probably wouldn’t get to do another post until after the New Year, didn’t I? But I really didn’t think it would be this long before I got to write something.

Life has been a bit of whirlwind these past few months. There’s been quite a lot going on for me: work, home, health & friends have kept me very busy. Isn’t it funny how time seems to fly by faster, the older you get? My friend has a theory that it’s because the older you get, each year is a smaller percentage comparison to your life - interesting theory, I think.

Anyway, let’s get on with what’s new…………

January 2007:
Health-wise, things were not looking too bad. I had quite a bit of energy & apart from the dreadful pain in my hips, all other symptoms were a breeze at that time.
I got my first ‘promotion’ at work. I took on a bit more responsibility & got a pay rise for it too. This was when I really started to carve my little niche within the company & so far, it’s working nicely, thank you very much!!

February 2007:
I had my 42nd birthday. Tried to persuade the family to forget it (didn’t really want to get any older – lol), but they weren’t having any of it. I had a lovely lunch out with my daughters & a real fun night out with a bunch of friends –a superb day (& not a drop of alcohol passed my lips)!!
I started regular dog walking with a friend too. I don’t have a dog, but absolutely adore hers. He’s a black flat coated retriever called Harvey & he’s absolutely adorable. We’ve been on several walks over the weeks, a lot of them quite taxing but oh so enjoyable & it gives the 2 of us an excellent opportunity to have a good old gossip & chin wag, which is something we both excel at – lol!!

March 2007:
My 2nd promotion at work & yes, another pay rise! Certainly no complaints coming from me on that score. My main job is senior administration, but now I took on the management of our company’s courses as well, which we offer to externals & offer on a continual basis. I get a lot of satisfaction out of this part of my job & have already received praise for my “natural flair” in the marketing & organisation of the courses.
Our company offers all employees a sizeable sum to join a sporting club so I used my money to join the local gym – something I never in my life before would’ve pictured myself doing. I always imagined gyms to be full of muscle-bound men, but in reality, our gym couldn’t be more the opposite! I go 3 times each week, Mondays, Wednesdays & Fridays, before work & am really starting to feel the benefit of it, both physically & mentally – I just hope that I can keep this up during treatment. I also started doing Tai Chi as part of my gym membership; I must look such a prat when I do it ‘coz everyone’s going up & left & I’m going down & right, but never mind, at least I’m giving it a go & it does relax me quite a lot.
I had my liver biopsy appointment on 20th March, which turned out to be a disaster & ended up in me writing a letter of complaint to the Chief Executive of the hospital. Having arrived in good time for my appointment & changing into my pyjamas, I was asked if I’d had my ‘clotting time’ blood test done prior to my appointment. “Yes”, I said, very confidently, “I had it done last week”. However, having checked my notes & rung the pathology lab twice, it turned out that I’d had the wrong test done & without a recent coagulation screen, they couldn’t do my biopsy. I was absolutely fuming!! Not only had I booked the entire day off work & arranged transport, but I’d spent ages psyching myself up for the biopsy. The staff in the X-ray department were lovely & very sympathetic. They gave me another appointment there & then for 17th April & also a blood test form – the correct one, I must say. So, when I left the X-ray department, I went straight to have my blood taken & then, as soon as I got out of the hospital, I rang my chocolate teapot (Hep C nurse). I told her what had happened & she proceeded to explain how it was the medical secretary’s job to send out the blood forms & that there had been a lot of sickness amongst the staff of late. I told her I didn’t want to hear the excuses & that I was going to write a letter of complaint, which I promptly did when I got home. I received a final letter to that complaint early in May & [knock me down with a feather], after a full investigation, the hospital are changing their procedure - it will now be the responsibility of the X-ray department to send out the blood forms!!! Quite a positive result, I thought.

April 2007:
Okay. So what happened last month??? This was a very eventful month……
It started off terribly, with my dad getting Belle’s Palsy, which is a viral condition (same virus that causes shingles) which results in one side (or far less common, both sides) of your face becoming paralysed. My mum thought he’d had a stroke & was worried sick. Dad hates going to the GP & had to be pushed to go. He was then sent to the hospital on a Friday evening, where I took him straight from work. He was kept in overnight, but home the following day with tablets & told to get plenty of rest. I think it frightened him, ‘coz for once in his life, he actually did as he was told & it settled down pretty quickly – within 8 weeks or so.
On 14th April I went to Derby for the NCHN conference. What an exhausting, but informative & pleasurable weekend!! I was soooo nervous, not knowing anyone – but that didn’t last long. I wasn’t the only one who didn’t know people & having something so strong in common, I felt so at home with everyone there. It was a weekend jam packed with information & chat, not to mention good food & accommodation. I have benefited so much from that weekend & it’s inspired me to give whatever I can back to the support group, no matter how small!
I finally had my liver biopsy on 17th April. Being arthritic, the hardest part for me, was keeping so still whilst the doctor took the biopsy & then lying flat for the 6 hours afterwards. I bled too much from the first site that she chose to try, so she had to give me double the local anaesthetic & try a second site which was successful. The anaesthetic made breathing quite a chore for ages afterwards, but I was back to work the following day, having put the experience behind me & the memory out of my mind. My chocolate teapot rang me just over 3 weeks later to say she’d got good news – I’m only a grade 1 fibrosis so damage is very minimal. She also gave me a firm date to start my treatment – 24th May. This started to bring home to me what was actually going to happen, although it all still seemed like a bad dream. She also said that, if I respond well to treatment, I may well get away with only doing 24 weeks instead of the usual 48; I’m not sure how I feel about this. The consensus on the forum seems to be that I should do the full 48 irrespective of my response & I think I’m inclined to agree. I know I’d curse if I only did the 24 & then relapsed ‘coz then there would always be that element of “what if…….?”
I plucked up the courage to tell my immediate boss after I’d got my treatment start date. My manager is the director of HR, herself disabled & a very open-minded lady. I spent over half an hour with her & told her my diagnosis & all about the treatment & possible side effects etc. She was great. Her reaction was very calm & sensitive. We discussed the potential need for me to take time off work & she said that we could arrange for me to work from home on days where, although I feel able to work, I couldn’t face going into the office. She also said she intends to support me in whatever way she can & always to remember that I can go & talk to her at any time. How good is that?? I feel very fortunate to have such an understanding manager. Although there are 60 people in our office, aside from my manager, I only work closely with 2 girls, both of whom I supervise & are considerably younger than me. I didn’t tell them anything until last Monday (21st May). All I said was that I’ve got a chronic health problem for which I need to take a form of chemotherapy for a year. I touched on the potential side effects & asked for their sensitivity & support, which they promised to give me & I’m confident that they will. I also said that if they have any questions, to come & see me privately & I’d be happy to talk to them. I feel I gave them just enough information & feel happy that they will be there for me within the confines of work.